Monday, October 31, 2011

We were leaving the AMC theatre after having seen Anonymous. There were crowds milling about because there was a group of people who were promoting a new independent Canadian Film about diversity, difference and disability: "An Insignificant Harvey". I had stopped to chat with them about the film and was just leaving when a huge commotion broke out behind me. A man, with a big white busy beard riding in a power chair, was coming out of the door to the building and a pregnant woman and her husband stepped in front of him. He pulled up short. Then he lost control, started swearing at them, telling her that he almost slammed into her, that he could have broken her legs, that she should pay attention to where she was walking. Her boyfriend yelled at him to shut up which resulted in him screaming profanities at the two passersby. People were turning and staring, at him, at the commotion, all looking delighted that they'd have a story to tell when they got home.

Here was my first response:

I was a tad outraged and, dare I say it, even embarrassed by the behaviour of the disabled guy. I thought he was rude and out of control. Shouting obscenities, on a city street, at passersby seemed, in my mind, to reflect badly on us disabled folks. When people looked from him to me, I did what I could to repair the damage to the reputation of disabled power chair users. I even looked at them, the non-disabled gawkers, when our eyes met, with a kind of conspiratorial 'what's up with him' look. As we headed on our way home, I could hear him for nearly half a block, threatening, 'next time I'll just run straight into you'. I tut tutted his lack of control and thought he was letting down the side.

Here's what happened next:

"Excuse me." "Thanks."

"Could you let me pass please?" "Thanks."

"Sorry but I need to get by." "Thanks."

Twice I was nearly trampled by people texting and walking, both times I apologized for being on the road in their way.

Several times, I had to adjust where I was to accommodate others. Several times more, I saw people coming and anticipated their space needs and adjusted for it. Not once did someone say 'thanks'. Not once did someone ask me in a mannerly manner to let them pass. Not once. I found myself, finally, when nearly home and nearly trampled by a woman who shouted at me to 'watch where I was going' when she looked up from her cell phone and was startled by finding me there, inwardly swearing at her. I found myself, cussing her out, cussing out the others - silently in my mind - who had presumed that this public space was theirs and theirs alone. The assumption that me and mine need to grovel for space to pass, to be thankful when they step aside, to make it my job to be constantly in anticipation of their needs, simply pisses me off.

Here's what I thought then:

That older guy, coming out of the building, looked, unlike me, as if he had been born with his disability. That means that he's spent nearly 60 or so years being 'othered' by others, being in the position of asking, lurching himself to a stop to accommodate those who can't be bothered to see him. That means that he's spent a lifetime alternating between being too visible and being completely invisible. That means that he's shouted, a lot, in his head at those who presume ownership of public space. I wonder if he just got tired of constantly monitoring himself, constantly being in control. I wonder, if when he pulled up short, protecting the woman who stepped in his path, and was lurched forward, that something broke inside of him. If he needed, that once, to let all the anger and frustration out. I wondered.

Here's what happened next:

We got to the apartment building. I had bags on the back of my chair, Joe was pulling the grocery cart. As I got to the door, I saw the young security guard, get up and come out to help us both with the doors. He is a wonderful guy, generous in spirit, and we both thanked him for helping us out. He said, with a smile, that he didn't mind at all. He then said, nervously, that no one else ever thanks him for helping out, that he appreciated our thanks.

Here's what I did next:

I hoped, deep down inside, that the man with the bushy beard, meet with kindness a time or two more in his day. Not the smothering 'othering' kindness that insults rather than helps, but the real, genuine, kindness that people have the capacity to offer. I hoped, deep down inside where prayer lives, that he has somewhere to off load his anger and upload his patience. I hoped, even deeper down inside, that I manage always to manage my anger and that it never become too big a burden to carry. In those moments, deep inside, I understood him as I should have from the start - not as 'other' but as brother.

Sunday, October 30, 2011

A few days ago, in the comment section, Julia asked a question She had (and I hope you don't mind me paraphrasing here, Julia) been on public transit, a large woman had been sitting taking up nearly two seats. When she got off, an older man sat down, calling her a 'fat pig' and suggested that if he had his way he'd send her to a boot camp (though the word could have been translated to mean 'concentration camp') Julia spoke up, out of real anger for what he had said, and told him that he wasn't so good looking either. There followed a war of words. In the comment I'm asked about how to best deal with these situations. It has taken me several days to come to this because I'm not sure I know the best solutions and its taken me days and days to formulate an answer of any kind.

Dear Julia,

First off, thank you for trying to do anything at all! I am always impressed when someone, in a world that prefers to greet cruelty with silent acceptance, has to courage to go against the grain and rise in protest. I think that single act is noteworthy itself. I'm betting you are spending more time worried about what you said, than he will ever spend considering the impact of his words on others around him.

In this situation, she had left the scene, this is different than if she had been there and it had been directed at her. I've been in situations when this kind of thing happens. Where racist remarks or gestures are made when someone of colour has come and gone. Where a woman's breasts or body is remarked upon after she has left the company of men. Where someone, noticeably gay, leaves and and the presumption of heterosexuality is made of the remaining few. Into those situation hateful or hurtful things are said, sometimes masked by a humourous tone. It always goes off like a bombshell in my heart and mind. I don't like the assumption that I too am a hateful hurtful person. The problem, I've always found, is that the speaker is usually someone who is used to the ways that bullies have of expecting and demanding the complicity of others.

It took me a long time to reach where you are now. It took me a long time to realize that I had a responsibility to break silence. When I did so, expecting that the silence of other good people would also be broken which would lead to their rallying around me - I found that this didn't always happen. That, instead, they most often joined the bully in protesting that I didn't have a sense of humour, that of course it wasn't meant that way, that I'm over sensitive and politically correct. Much like what happens on the Internet when bullies get called on their behaviour. Oh well. But, now knowing that perhaps, mine will be the only voice in opposition (even if others agree but act contrary to their agreement out of fear) makes it more, not less, important that I speak at all.

I had to learn to speak, out of protest, not anger. Like you, I began by using the fuel that anger gave me, to ignite my courage, and like you I always left the situation wondering how to have done it differently, said it differently, reacted more carefully. When I discovered the difference between protest and anger, I got a little better at it. I follow these three rules.

1) Never respond to insult with insult. This is the only point which I'd ask you to think about how the response might have been different. To talk about his looks after he comment about her looks leaves a kind of agreement that looks are fair game for judgement and comment on another. The issue isn't the old guy's looks, it's his behaviour and it's his assumption that all around agree. Those to me are the issues at the core of what needs to be addressed.

2) Speak about 'self' in 'I statements', not about 'them' in 'you statements'. The temptation is to go on attack. To respond by personalizing the discussion so that, suddenly, you aren't talking about what happened but, instead about the interaction which is happening presently. People leave these situations saying things like 'and out of the blue she attacked him' - you become the story, the issue is forgotten.

3) Speak as much, if not more, to others around rather than to the person specifically. You've got to bet that there are others who agree with you but are afraid, for many reasons, to speak up. Engage them, make their silence an agreement with you rather than an accord with the bully.

So, some responses that might have been useful in a situation like this:

Look around at others and say some things like:

I don't know about the rest of you, but I like the fact that others are different.

Look who thinks we are all bigots.

All I know is that I could never behave so hatefully to another.

My mother brought me up to behave with kindness, I guess this is why.

Or, if addressing him directly, and these need to be used more cautiously assessing your own personal danger. Call me a coward but I'd never use these when alone with the person in a closed environment:

Don't assume that I agree with you - I like differences in people.

I don't like hearing hateful talk about others, I believe in kindness.

Whoa, what happened to civility?

So those are some ideas. To me I found, after I'd thought about it that I was bothered as much by the assumption that I'm part of a mob who find hateful remarks acceptable as I was about the hateful remark itself. I didn't like the absolute trust that bullies had in the complicity of others, me included. I didn't like being made meek in the face of another's outrageous courage. Those are what I felt I had the power to respond to. The other thing that I realized is that kindness is seen as synonymous with passivity - it's not - kindness is powerful, is motivating, is revolutionary. The power of kindness is the ability it gives the speaker to speak from a different point of view. Love may not rage as much as hate does - but love is an unstoppable force, if only because of the constancy of the fuel supply. So, I believe that acts of public kindness go beyond picking up a lost teddy for a crying child - I think acts of public kindness are most powerfully done in a voice raised in protest at the treatment of another.

I believe Julia, you acted on an impulse to love and care for another, in the face of a brutal attack. Your action, even if you might want to do it differently, made a difference. Trust that. Thank your heart for beating strongly within your breast. Because, I thank you ... because as a fat guy at a computer in Canada, I know that in Germany, I have a friend.

Saturday, October 29, 2011

Delivered over years and years all those years and years ago. A lifetime or two has passed since then. But even so there is still a mark on my soul that is the distinctive colour of bruise. Even the slightest touch there, hurts, deeply. Even the slightest breeze over the tender skin reawakens the ache. Up through time, comes the horror, the overwhelming fear, and at sixty, I'm six again. An adult, a child again. Power is gone, strength is gone, words are gone.

For me it is a tone of voice, a tone that I feel dismisses me, that I feel diminishes me, that I feel dishonours who I am. "Who do you think you are?" asked of a four year old ... leaves the only right answer to be "no one, no one at all." And that's what happens when I hear that tone. A cascading river of humiliation pours over me. A reminder that no matter what I do, now, will never, ever, make up for what happened then.

Today, this morning, I asked Joe a question. We were both tired. He spoke to me with impatience, he spoke to me with that tone that called me 'stupid'. Hearing that tone, in his voice, hurts beyond measure. I don't understand why he can't hear it. I don't understand why, when that tone is used, the world doesn't stop and gape at the cruelty behind the message contained in the timbre. When a soul is struck, why don't the angels cry out in protest. When a spirit is assaulted, why doesn't the world stop - shocked. When a 'self' is rent asunder, why does it fall in Humpty Dumpty confusion never to be put back together again.

And, AND, A.N.D. I hear that voice all the time. I hear it in the mouths of parents who speak to children as if children aren't breakable. I hear it in the impatience that comes in the moment, the impatience that forgets what it was to be powerless, to be left gasping for air - struck by parents who forget that their power has a very long reach ... a reach deep into the heart of self hood. I hear it and wonder - do these parents remember that love is a decision that is made every moment, that love is an action more often of restraint than it is of generosity, that the love a child offers is only free for a very short while, that the love that they need now, you will need then? Perhaps not, because I hear that voice all the time.

And, AND, A.N.D. I hear it in words that flow over people with disabilities, words that are paid for, paid for by their disability, paid for by their need for support, paid for by employers without the power to employ. I hear that tone used, and used, and used again as if disability comes with it the inability to feel humiliation to understand dominance. Disability does not mean inequity - though you'd never guess that. Disability does not mean inability to understand, or feel, or hurt - though you'd never guess that. Disability does not mean that discrimination, in act, or tone, or deed is acceptable practice - though you'd never guess that.

And, AND A.N.D. I hear it in the words spoken between those who pledged to love and honour each other. I hear it in the words that pass between couples. I see it's footprints that draw a line, a demilitarization zone, down the center of a table between two who once loved - who now eat without speaking. I hear it been men who love men, between women who love women. I hear it in mixed marriages of men and women. I hear it in my mouth when I speak to Joe with impatience. In his mouth when he speaks to me in frustration. I hear it and wonder how it can be that it comes to this. I hear it and react with anger. I say it and live with regret. How does it become so easy to hurt another, to diminish another. Why is praise not natural? Why is cruelty so easy? I don't know.

Perhaps because the angels don't cry out.

Perhaps because the world doesn't stop.

Perhaps because the responsibility lay with us, lay with those too tired, too busy, to care any more.

Do people realize the damage that can be done?

By a tone.

By a glance.

By a stare.

Sticks and Stones ... bring them on. Let them rain down on me. But, Lord God Almighty, please, please, please, watch what you say. But, I beg of you, watch how you say it.

Friday, October 28, 2011

All I did was ask Joe if the store had a wheelchair aisle. A woman, nearby, overheard my question and took off like a shot, bobbing and weaving with her cart, through the crowd ahead of us. A few seconds later she was back, and panting, and told me the wheelchair aisles were up head of us past about five check out points. OK. Thanks. I guess.

My question was not of her, I wasn't even speaking to her, I was speaking to Joe. Joe is standing, I am seated, he can see farther and in fact, while she was off on the scooting party, he had turned and said, 'Yes, I can see them up ahead.'

This little, small, incident, has stayed with me.

Bothering me.

She had rushed to help.

That's a good thing, right?

I felt her help intrusive.

That's a bad thing, right?

She took a lot of effort to be kind to a stranger.

That's a good thing, right?

I didn't like being made to feel a bother to someone.

That's a bad thing, right?

She smiled, widely, at my thank you.

That's a good thing, right?

I felt like I existed to make her feel good.

That's a bad thing, right?

Sometimes I don't know how to understand my own existence. I think that's because I am always caught in some kind of social mix. And often, in that mix, I, me, Dave, am totally irrelevant to what's going on. My wheelchair has relevance, my disability has prominence, but I, me, Dave, am not what's vital to the interaction. Then, in those interactions, I feel quite lost. Like I wonder if I have any right to feel anything at all, except alone, when what's going on doesn't really require me at all. Oh, there needs to be a warm body in the chair, but it doesn't need to be mine, I'm just there to allow for the illusion that it's about me. Not about stereotype, or pity, or some other complex emotion triggered by a wheelchair or a disability.

Thursday, October 27, 2011

So, after we finished work in Boston yesterday we got in the car and headed to Poughkeepsie. I've got a keynote to do before heading home. I'd had several cups of tea and by the time we got to the hotel both Joe and I were bursting for a bathroom. We realized that, one of the parts of getting older, is that bathrooms become increasingly more important, and trips there are a little more frequent. We've decided that's why we call them 'the golden years'.

In the room, Joe was having an ache in his shoulder so he asked me to hand him the 'Benny Tinn' from our pill case, I handed over the aspirin. We've renamed the metallic bottle they are kept in 'Benny Tinn' after Benny Hinn, the television evangelist who regularly heals people of huge, improbable diseases. We did this because when we've got a twinge we now need the aspirin to work miracles in our bodies and keep us going.

Our sense of humour, both of us, about every new phase of our life, is really a powerful thing. The other day, Joe was pushing me somewhere and winced a few times? Here was our conversation:

'Shoulder?'
'No, knee.'

a few minutes later

'Foot?'
'No, leg.'

a few minutes later

'Hip?'
'No, shoulder.'

Suddenly, we were laughing. A day after his birthday and his whole body was in protest. Others around us must have thought we heard the punchline to the funniest joke. Because we were both giggling wildly.

I got into the hotel and somehow, riding a chair, I managed to twist my ankle. So now, when I walk the bit that I do walk, I'm hopping. When I hop, my body makes weird slapping noises.

How fitting.

My body is applauding the two of us making it through, simply, another day.

Wednesday, October 26, 2011

After work yesterday, we went over to Whole Foods Market to pick up dinner. First we wandered around the store, did some Christmas shopping, filling up the bag on the back of my wheelchair. Then we went over and filled up some cardboard containers with supper and headed out. Joe took the bag back to the car while I wandered around a store that was stuffed full of stuff.

He joined me and we looked at things, talking about who might like what. Joe's not the shopper I am but he indulges me in this and we spent a pleasant half hour or so looking at stuff, him calling me to look at something, me calling him. We didn't buy anything but got a few ideas. Then we got back to the car and rode over to the hotel.

Once back in the room we answered a few emails, watched some television, had some dinner, and went to bed. It was a nice, but unremarkable evening.

I don't think it's the kind of day that many of those who we encountered during our wander imagined we had. Both of us noticed, but didn't talk about because it too is part of 'the new normal' in our lives, people staring at the both of us. Some pitying Joe. Others pitying me. I think that they think that our days our somehow wildly different than theirs. That our time is spent somehow in different ways, doing different things. Different people do different things, don't they?

We encountered this, and still do to some extent, years ago as a gay couple. (I think our 'coupleness' is nigh on made invisible by my disability, most seem to think Joe either a brother or a care provider.) As a gay couple it surprised people that we shopped, made dinner, went to work ... lived quite ordinary lives. I never really knew what they imagined. I was always just bemused at the idea that somehow gay people were supposed to just spend all our time 'being gay' and none of our time frying eggs for breakfast.

I think the fear that people place on the possibility of their own disability some day is that there will be a loss of 'ordinary'. Well, let me testify, here and now, that we have a lot of 'ordinary' in our lives. It is a 'new ordinary' because old stuff is done in new ways, but it's still old stuff.

All this to say, that we had a lovely, quiet, ordinary night and I'm really, truly grateful for it.

Tuesday, October 25, 2011

We had checked into a hotel, which we had checked into before checking in. One of the many questions we have is about the Internet. Though we've tried to have this fixed several times, my laptop will stubbornly not connect to the net through a wire, it has to be wireless. So we ask. If they don't have wireless, we don't stay. We had checked, on booking, they said they had wireless. We had checked at check in, we were told they had wireless.

Once in the room, remember this takes work with all the luggage, and me in the wheelchair, I tried to get on line and there was no wireless. I called the front desk. I spoke to a different person than I had to originally and was told that the wireless was supposed to be put in last week but something happened and it wasn't in yet. I was immediately steamed. I had several work emails that needed done. I had other commitments to fulfill. More than that, Joe and I had planned to watch a new episode of this season's QI on YouTube as part of his birthday celebrations. None of that would be possible.

They guy on the desk said, hopefully and helpfully, that there was wireless in the lobby if I cared to come and use it.

Then it leapt out of my mouth, "I'm in a wheelchair and that's just not possible for me."

I said it because I wanted him to feel especially bad.

Goodness gracious me. What an awful thing to say. Firstly, while it's true that it would be more of a bother for me to get to the lobby than a typical walking person, that wasn't the point. Secondly, the point was that I DIDN'T WANT TO GO TO THE LOBBY I WANTED INTERNET IN MY ROOM AS PROMISED. But what came out of my mouth was this 'wheelchair stuff'. Oh. My. Goodness.

When he was apologizing again, I sat there thinking, 'Great, now you've gone and made it look like people who use wheelchairs are somehow more deserving of apology than others who would have been inconvenienced by the error. That being in a wheelchair exempted me from doing what I could have done if I had wanted to do it. That I was way more disabled by being a wheelchair user than I actually was. That, somehow the crime was more egregious because it was done to ME.'

How is that for playing into the stereotype?

How is that for setting said guy up to think that those of us who use wheelchairs are helpless cripples?

Nice one Dave.

Here I've been thinking about my use of language, maybe I should be thinking more about my use of disability in situations like that.

Monday, October 24, 2011

I spoke a couple days ago at the Muki Baum conference 'Come To Your Senses' which was billed as an international sensory conference. I had done a keynote speech and was outside by the book table coming down from it. It had gone well. Several people from the conference had come and chatted then went back in for the next session. There was about five minutes where it seemed that I was going to be alone for the next forty or so minutes. I looked around, no one was there, and then let rip a huge fart. When ya gatta, ya gatta.

A few seconds later a few people came up the stairs and noticed the book tables on either side. They went over to the other book table and for a few minutes I thought I was safe. Then, to my horror, an incredibly deep and rich smell of such putrid intensity formed an invisible cloud around me. My eyes were watering. Then using every bit of psychic power I had, I pushed the shoppers to stay and buy at the other table. My abilities in this regard are weak.

They turned and headed towards me. For a few minutes they were at the other end of the table, and then they approached the 'don your gas masks' zone. What could I do. I did nothing. I sat looking innocent. I sat looking as if my eyes were watering because I was moved by a deep inner thought. Then it hit them, all at once. They froze. Horror slowly flickered on their faces. They looked at each other with that 'was that you?' look. Then as one they looked towards me.

I asked them if I could help them with anything, they said 'no' and fled.

I wondered if I should charge extra for providing an example of just how powerful a sensory experience could be.

Saturday, October 22, 2011

Last week I began a personal crusade. I want to write about it but this first:

When someone goes on a diet and tells me so, I don't think that they are telling me to go on a diet.

When someone starts running every day for fitness, I don't think that they are telling me to do the same.

When someone tells me that they are working to clean up their language, I sure as hell don't think they are telling me to stop cursing.

Therefore, it's possible for someone do try to do something to improve themselves, or more often to prove to themselves that they can - without placing pressure on others to do the same. This is just me. This is just my goal.

Caution over.

Recently I became aware of the number of times I use 'disability as a negative metaphor' and 'ability as a positive metaphor':

He was deaf to my complaints.

They were blind to the effect their actions had on others.

I need people to sometimes take the time to walk me though an idea.

I see what you are saying.

Now, I am very much on the bandwagon of ending the 'R' word. The words above are not used in the same way, they don't target with the purpose of hurt. In fact when someone says to me, as happened recently, "Dave will you walk us through this?' I didn't raise a fuss because the speaker had no unkindness in mind. It's pretty hard not to use the 'R' word without unkindness in mind. Even so, it's beginning to bother me that I use these words. I'm a disabled person, these words reflect on others in my community. Further, I give lectures to thousands of people a year.

Question: Isn't it odd for a person with a disability who espouses a position of 'disability pride' to be on a podium using 'metaphors that present disability as a negative?'

Answer: Um, yes.

So I decided to take these words out of my language. I'm lucky because, I have a vocabulary that allows me to do so. I don't need them. I began to see them as a lazy way to describe a situation. It only takes a moment's thought to rephrase.

My project began here on this blog a couple months ago. My awareness was first raised when I referred to a situation as 'scitzophrenic' and a huge discussion happened here. I changed the post. Slowly from there I began really reading the comments from readers with varying experiences of disability and of the prejudices that each face. Why should language on a DISABILITY BLOG be careless. Especially since, there are so many other ways of saying the same thing.

It's been a few weeks that my writing was intentional here, it's always been intentional to the message I want to give, but it has become intentional as to how I give the message. I know I've slipped - disability words and negative metaphors are more integrated into language than people with disabilities have ever been into society. Even so, I'm trying.

Last week I began to work at getting them out of my speech. I think they had diminished during my exercise with writing differently. Even so, they were there, in abundance. What I've determined to do is, when I use the word and catch it as it comes out, I stop, apologize, explain what I'm doing, change the expression and move on. It was going well, the confused looks on the faces of others made them all look 'cute' ... which was nice because 'hostile' was an option and I never saw it once.

That same week I was doing a day long training and had to stop at least twice, correct my wording, and continue. The audience went with the flow and no one much said anything to me. But it was an intimate setting and the room had really gelled into a kind of cool place to be. So, good. First time I had to do it in front of others, and it went well.

Today, in a few hours in fact, I'm doing a keynote speech at the same conference. I know a Keynote on a Saturday! Anyways, I am writing here because I want somewhere to pledge out loud that if I'm going to do it, I'm going to do it. So, if I use 'we can't be blind to consequences'...' I'm going to stop, apologize for the poor choice of words, change them to something like (context matters of course) 'We can't ignore consequences.' It's an easy thing to do, but may trip up the flow of a keynote. But, I am determined to go into next year with speech that reflects my belief that disability isn't a negative experience and that anyone with a disability who hears me speak or reads my writing will know that I've made the attempt. So any readers who are about to hear me speak today, realize I'm talking to you with a sniffer dog watching over how I speak, and if I have to embarrass myself by stopping and changing and expression, so be it. (I hope I have the courage.)

Do I intend to start a trend?

Only in my life.

When you go on a diet, I don't eat less.

So, I'm telling you this because I want to be able to come back here, to my blog community, every now and then and talk about what this is like. To have 'disability proud' language and to live a 'disability proud' life. That is the next step in my evolution as a writer / speaker.

Hold me accountable when I err.

I'll thank you.

PS

This was up and published when I read it to Joe as part of the editing process. In that edit I found three uses of 'ability as a positive metaphor' in the text. They are gone now. The 'disability as a negative' are easier to spot, but I'll get good at both with time. If you see others here, read as critically as you can, I want to learn this, I believe it's possible, let me know and I will change it if we both agree.

Friday, October 21, 2011

We hadn't been for tea at our little local tea shop for some while. Though I got home from work later than planned and though I had more work yet to do, when I came in through the door, I saw Henry, my power chair, looking lost, lonely and worst of all ... dusty. It was time to go out. Joe got my manual chair in through the door as I cleared off the seat of my power chair. We were going out. We were going for tea.

It was a wet and cold late afternoon, the sky was already dark. But as I sped along, I found that the breeze, though bracing was somehow cleansing. Several things had happened during the day that seemed to conspire together to pull me out of myself and back into the world. It began with a team of people gathering together and agreeing to attempt something huge that will take hard work and incredible focus. They all seemed to be willing and determined to create time and space, where none existed, to do something simply because it was the right thing to do and because it would make a difference. I was buoyed up by their excitement. Sometimes it's really nice to be surrounded by youthful exuberance - to siphon off some optimism from those who see the world as it is - changeable.

Then I received two packages. The first was a bunch of magazines called Voice from Australia containing an article written by myself and others at Vita. One of the other authors was there in the office and I was able to let him open it and be the first to see it. That happened several weeks ago with the Abilities magazine, again I got to let a young staff open it first and see her name in print before any of the rest of us did. I like that kind of opportunity. Then, as if all that wasn't enough, I received another package, this one with the book "Rights Agenda" that was just published and for which I had been invited to write the introduction.

It was a day of nice things following nice things.

So, we were going out. I noticed that I was noticing things again. Seeing people bustling about. It was like being in the FOG I'd come to see the world as sparsely populated. As if driving into Canada's most populace city, the sign would read:

Welcome To Toronto
POP: 1

Where did all these people come from? I again began to see that my life is simply one of many, that my concerns are not the end of the world, but part of the world, that the worry that had visited my face - visited the faces of others. I could be alone in a crowd but not alone in a crowd. We are pack animals, I'd forgotten that in the past few days.

So, I met up with Joe at the bottom of the elevator. It's a shorter walk for him to go in down the stairs and meet me there. We trundled off to the tea shop. I parked at the table and picked up the phone to make a difficult call. It's one I'd been putting off, not having the energy, but Joe and I decided that now was as good a time as any. Joe indicated that he had to go to the bathroom. There was a line up at the counter so I continued to hold after indicating through a nod to the question "The usual? what it was we wanted"

I'd just hung up from a conversation that went better than it should have. But I must have been frowning when I closed the phone. A young man had been entering the small shop, he was painfully thin, had painful looking piercings on his lip and eyebrow, and walked assisted by a brace of some kind that wrapped around his shoe. He was carrying a hardcover book, "My Queer War" under his arm. I noticed him notice me notice the book. I saw a flash of panic in his face, then a momentary fearfulness at the look on my face. My face, at rest looks angry (something that has caused me no end of problems - 'yes, really, I'm fine') and my face, when frowning can look really daunting.

He stepped by me and carried two small bags of tea over to the line up at the counter. The phone was now placed down on the table and I was concerned. I wondered if he'd pegged me for some big ol' homophobic bigot who had seen the book and then seen him and cast judgements. "Let they who have not experienced harsh judgement cast the first ..." I glanced over at him and saw him standing, rigidly not looking in my direction.

I'm not going to let this happen. I'm simply not. I saw him standing 'living in' instead of 'being out' and I had been the cause of it. I've spent way too much of my life 'in' and in the last few weeks that's where I'd been living. No way was I going to be insensitive to my effect, even as a casual stranger, on another.

I've been reading the book "Birdsong" by Sebastian Faulks and that gave me the in. "May I see the book you are reading?" I asked. He looked at me shocked. I continued, "I am very interested in stories from the Wars, I don't know that book." My tone was studiously friendly. He handed the book over for me to see and stepped out of the line. I explained about "Birdsong" as I looked at his book, taken out of the library. His face relaxed and he told me a bit about the author of the book and how much he was enjoying it.

I'd just handed the book back to him when Joe returned from the washroom. The young man's face went from shock to realization and he grinned.

There had been an Ally where he had seen the Enemy.

He'd made a mistake that I have made often.

I had a chance to correct it this time. And I took it. It was only a moment but I'd been able to reclaim a situation that could have left a lingering bruise on another's heart and a lingering regret in my own. It was nice to again realize that I have power over how my world is experienced. By others but also by me. It was nice to realize, again, that I have a responsibility to ensure that who I am and how I am - does not damage or hurt who others are and how they experience their world.

Thursday, October 20, 2011

Years ago, someone told me that 'FOG' is an acronym for 'Fucking Opportunity for Growth'. I've never much liked acronyms, but that one, I got right away. I have appreciated the kindness from blog readers and from friends over the last few weeks, I have especially appreciated the respect for my privacy without which, kindness could not have been possible.

I'm almost done with working through a very difficult and very emotional situation. I had been motoring along for the last five or so years, everything going fine, and as such had come to believe that maybe, at nearly sixty. I had arrived. That I'd done the complex job of growth and had finally edged on to firm footing.

Nope.

It's now clear to me that life requires growth, and for the most part, growth involves some pain. Spending the last little while in deep reflection about what I believe and about what I do and about how I present myself to myself and how that differs from how I present myself to the world - has not been pleasant. A shocking traumatic experience, coming out of the blue, has forced a time of evaluation and questioning.

As I move out and on from that experience, my soul sore from all the exercise, I have a small sense of gratefulness for being made to stop and really think about my morals, my values and my behaviour. I don't like to have to examine, carefully, the reality that what I do has consequences in the lives of others - but I need to, I need to be forced by circumstance (because it would never happen by choice) into periods of reflection.

I believe that it's called 'reflection' for a reason. I believe that there are moments when we have to take a mirror and look deeply at the our reflection, deeply at who we are, deeply at how we behave, deeply at what we believe, deeply at what we have done. I don't know if you hold that mirror in trembling hands, but I do. I'm terrified of what I'll see. I'm as frightened of that mirror as Dorian Grey was of the portrait in the attic. Our soul can be seen, Wilde suggested in that novel, and I believe he was right.

So, I am was challenged by life and am changed by reflection. This is a good thing.

But I hope, and pray, that there won't be FOG in the forecast for a good long while.

Wednesday, October 19, 2011

I got up yesterday morning to an email inviting me to see a new video made by people with disabilities who are confronting bullying and teasing in the school system. Given how I've been feeling these past few days, I didn't really want to see it even though I really wanted to see it - if you know what I mean. I decided to give it a go and, I loved it. There was something in there that person who sent me the email really wanted me to see, but she didn't tell me.

It caught me totally off guard.

I had been wondering if it mattered that I do what I do. I think, maybe, that it does, but I'll let the video speak for itself:

Tuesday, October 18, 2011

We pulled into the parking lot just as a monster and a skeleton were coming down the stairs. They spotted us and ran towards the car, growling and screaming and making ghostly noises. Behind the masks were two little girls intent on scaring us and were delighted when we screamed in terror. They fair danced with glee at our reaction. For the first time in days, we both laughed. They joined in our laughter. It was a terrific moment.

I had seen the 'masks' in the pharmacy's Halloween section. They are wonderfully creative in that they are toques that you pull down over your eyes, with two eye holes crafted such that they fit with the image printed on the fabric. One a 'Frankenstien' face, one a skull with big dark eyes. They come with gloves that match, green hands on one, skeleton hands on the other. On our way home from the Maritimes we decided to stop in Ottawa and go out for breakfast with Mike and the kids. Marissa was off working but Mike sent her pictures of the meal. One of Ruby with the Banana Split Waffle is destined to be a classic in their album.

My overwhelming sadness, held at bay during work hours, eased a bit as I taught, or tried to teach, Ruby to play X's and O's. She didn't see why it was necessary to be always X or always O. She thought it made sense to just put down which ever you wanted when it was your turn. Your turn, was your turn, and you should do what you want with it. After a couple of tries, I gave up and just played by a set of rules that formulated whilst playing. I figure Ruby's only just five, she doesn't need games full of rules right now.

The restaurant was overcrowded and noisy. Music blared from speakers, people blared at each other, we had to almost shout to be heard. But we passed away almost two hours just being together and chatting. Playing 'non-games' and having fun. Afterwards we went to the Dollar store to see how far 5 dollars could stretch. Apparently, to our surprise it stretched all the way to 12 dollars. Rules just weren't too important that day. I followed Ruby down an isle and she skipped along in front of me. She skipped simply because walking didn't make sense to her.

When we got in the car to go home, the sudden quiet was a shock. I laid back in my seat when suddenly a skull face appeared at one window and a monster face at the other. We screamed again. we laughed again, and then it was time to head back into the real world.

I welcomed grief back into the seat beside me. But, instead, it chose to stay in the back seat. I think the monsters scared it away a bit. And I suppose that's the point of childhood isn't it. For children to beat back, in tough moments, the thought that maybe it's really just hopeless. Maybe that's why we decided to take the extra time and travel the extra distance to have breakfast with the kind of monsters that make us laugh. Maybe we needed to be reminded that sometimes an X can become an O just because you want it to. That when it's your turn, it's your turn. And, that, even in a wheelchair, you can skip down the aisle of the Dollar Store.

Monday, October 17, 2011

So, I had to improvise. First I tried turning the power chair round and going at it from a different direction. I thought I'd maybe be able to reach up to where it was, just out of reach on the top shelf. I could touch it but not get enough of a grip to be able to lift it over the cardboard barrier created by the box it came in. The only person around was a young surly looking guard. He was stocky, wore a tight blue official kind of sweater, dark blue pants, and had handcuffs attached to his belt. He wasn't, um, what's the word, approachable.

But what the hell, the Keller was out of reach.

I asked him in my most polite voice if he'd help me by putting eight tins into my waiting bag. He glanced around to see if he was being watched, grunted that he'd help me, and then came over and put the beer in the bag as if it was the most degrading thing he'd ever done. As he was doing it, I asked, "What's the big deal, something like this must break the tedium of the job doesn't it?" He smiled a kind of apology and said, "In my job, I've got to look and act tough."

"Hmmm," I said, "personally I think helping a guy in a wheelchair get beer not only looks tough, it looks vaguely illegal." He permitted himself a very small laugh. Bag loaded with the requisite number of Kellers, I went in search of a few Stellas to add to the bag and then decided on getting a couple Saint Peter's Ale because it was Sunday and because I like the bottle. It was quite the shopping trip.

As I was heading up to the cashier, the guard stopped me and said, "I thought about what you said, you're right, helping you out didn't make me look weak. Besides there are lots of ways to be strong, aren't there?" I could see he had really thought this through, "Yes," I answered, "and one of the most powerful ways to show strength is to ask for help when needed."

Sunday, October 16, 2011

I try not to spend much time blogging about blogging. But sometimes I have too. I am blessed with many wonderful readers, regular comment makers, and dedicated followers. It's one of the reasons why I still blog every day. I always try to make time to write, which means that I always try to stay alert to my world so that I'll have something to say. Joe will often be with me when something happens and joke 'well tomorrow's blog is written'. It's now a part of our lives.

But only a part.

Some readers become a little angry or upset when, though other means, they hear of something that has gone on in my life that I haven't written about on the blog. They accuse me of inauthenticity. I find this accusation odd. I do realize that I have a kind of 'social contract' with my readers. But I have never thought that that contact extended into areas of my life which I would like to be kept private.

Once when giving a lecture I mentioned how odd I find it that total strangers will ask me for my 'diagnosis' or
for a 'health status report'. Like since my disability is up for public view, my medical records should be available, hanging on a clipboard on the back of my wheelchair. Um. No. Um. Private. There are things that you may wish to know but that wish does not compel me to divulge. That's not the way it works. So, after I gave that lecture, two guys came up to me and said, 'So why are you in the wheelchair anyways, what have the doctors said.' I was polite because my only other option at that moment was extreme vulgarity wrapped up in rudeness. I chose not to go down that path. Not so much for them, but it take me longer and longer to repair myself after one of those bouts.

So, yes, I hinted at it yesterday. Something is going on in my life that is causing immense sadness, anxiety and despair. I don't choose to write about it for two reasons, first and foremost, I don't want to, second and even more importantly, it involves others and I have no wish to share private information about others here. So I don't.

I have long believed that people with disabilities lives are too public, much too public. That information is to easily and freely shared between people between service providers, at meetings, over coffee. We come to believe we need information about someone to serve them when in fact much of the information we have only serves to feed our curiosity and never enters our head when providing care. We need to learn to practice the same boundaries we say that they don't have.

So, to those who've asked, over email or in person, thanks for your concern, but this is something I'm holding in my heart. There's little room in there for a crowd.

Saturday, October 15, 2011

After work we went to pick up a couple of things for supper. We were in a huge store, and I enjoyed pushing myself up and down aisles. As the store was so large, Joe stepped in and gave me a push a couple of times. When done we headed to pay for our groceries. There was a line up of at least fifteen checkouts, we strolled along looking for the wheelchair accessible one. Finally, we asked one of the clerks, who had a short line up waiting, where the wheelchair accessible one was. She didn't know. She thought it might be the one back the way we came, the first in the line of check outs. She wasn't sure so she called. There wasn't one. That hit me harder than it should have. I mean, I'm used to this right? There were so many 'for them' couldn't there be one 'for me'?

We were told to go to the customer service desk and tell them that we were told to come there. We went to the customer service desk, but the problem is that only customers going to the customer service desk are customers who want or need service. The line up was long, the problems complex. I said to Joe, "Just take the stuff off the back of my chair and go pay, I'm way too tired to wait." He unhooked the bag off the back of my chair and headed off.

I rolled back over to wait form him The clerk we had spoken to was near the end of the very, very, very long line of checkouts, none of which was adapted, and saw me as I pulled up to park. There was a question in her glance, I just said that there was a long line up of complex issues and it would take forever. She said, 'But you were next in line here.' Now there was a long line up. 'Where's your friend? I'll take him next.' I said I didn't know but that he was somewhere back there trying to get through.'

After finishing one customer she came over and said, 'Do you want me to call a manager so you can speak to him?' I said, 'I am tired of fighting this battle, I've just finished a long day of work and I've got some other big things going on in my life right now. I'll just not come back, that will have to be the extent of my protest.' She said she understood.

After finishing the next customer she came back and said, 'It would be a really good time to let the management know, they are going to be renovating.' I said, 'I have no emotional strength to do this right now, right now I'm getting through, another time, another me, would take this on. I'm just not coming back.' She said she understood.

It was weird for me to do this, to have an issue and an opportunity to protest, but sometimes, I have an important right. I have the right to not be the warrior in the wheelchair. I have the right to let life affect me in the same way that life affects others. I may have to work, before grieving, I may have to work, before 'going home' ... but I've done what I can. Kept commitments that there was no time to change, changed commitments when there was still time for people to be understanding. I've not let my 'life' affect the work done. But, it will affect other things.

There is a store with a billion check outs without one for people with disabilities. There was a guy with a disability who is used to protesting injustice. He didn't do it. He sat silent and let go both the responsibility to make change and the anger behind that responsibility, simply because, sometimes you need faith that there will be another voice, another protest ... that you need to take care of you, that others can take care of the world for awhile.

She, as I was leaving, came back over quickly - 'I'm going to let them know that you, a customer was made to sit alone unable to go through to pay with your groceries with your money. I have never seen something so grossly unfair. I'm ashamed that happened to you here in my store. I'm ashamed I never noticed it. Can I just promise you that they will hear about this.' I said that yes, I appreciated it. She smiled at the permission as I rode away, she called, 'I hope the load gets lighter.' And in that moment it did, it did feel lighter.

Friday, October 14, 2011

I had a conversation today with a delightful young man named Andrew. I've spoken to him and his mother and have permission from them to write about that conversation. It happened during the lunch break and he came up to tell me that his mom was enjoying my talk but that he hadn't been listening very much. I laughed and said I could understand that his mind might be elsewhere.

I'm not sure how it happened, but somewhere in our chat he mentioned to me that he had Autism. I asked him what that meant to him and he said, without thinking, that having Autism explained to him, helped him understand who he was and why he was who he was. Those aren't his words, they're my understanding of his words. He said that before he knew he had autism he thought there was something really wrong with him. But once he knew that there was a word for what he was, he could just relax. "It didn't change me, but it changed how I saw the world." Those are his words, not mine.

Never have I heard a better way of describing why it's important for kids to know who they are, to have a means of identifying themselves to themselves. So many parents don't tell their kids with intellectual disabilities or autism about their disabilities and differences. So many people are terrified of 'labels' I'm not one of those. I believe in the politics of identity, I believe that identity is at the core of self acceptance, I believe that identity will confront shame, that shame confronted will morph into pride, that pride established will change the world.

Andrew, was a kid with a great sense of humour. He told me that when he made jokes about his autism he felt better because he could just laugh at his experiences. I told him that I did the same, it was a great way of releasing stress. We had much in common.

He went away from the stage and back to his mother and as I watched him, I thought, 'Self acceptance, that's the future.' Andrew, no doubt has faced and will face bitter battles with society and those who refuse to accept what he knows to be the truth - that Andrew's identity is bigger than
personality and smaller than Autism, and that somewhere between those two points is Andrew More and Andrew less. Goldilocks would have called him 'Just Right'. And so do I.

Thursday, October 13, 2011

He was standing, looking perplexed. As I rolled by, he called out to me. I was in my powerchair, so I slowed, turned to face him, and stopped. Joe had been caught short and it took his legs longer to register the change of direction and destination than it did the tires on my chair. I waited to hear what the fellow had to say. He was in his early thirties, he wore black pants, a black fall jacket and white ear phones. He pulled the buds out of his ears and said, "I'm a bit lost. I need some help."

I had recognized, right off, that he had Down Syndrome, and I wondered then how long he had been waiting to ask for help. I simply said, "OK, where are you going?" As it turned out he as on the wrong side, heading the wrong way. It was an easy fix. He thanked us. I asked him, "How did you choose me to call?"

You see, these situations interest me, I want to learn what strategies that people use in situations like this so that I can teach them or incorporate them into my writing. Nothing beats success, and while I learn a lot from my own mistakes, I also learn a lot from the successes of others. He said, "My mother taught me that if I got lost, to wait, even if it's for a long time, for someone who I think would be safe to ask." I will admit to a feeling of instant pride to have been put into that category. I asked him further, "What about me made me safe." He said, "You are in a wheelchair, you know what it's like to need help, you know what it's like to be afraid some times." OK, I thought, isn't universally true of wheelchair users, but probably a good percentage. Then, I asked, "If I hadn't come along, who then?" He said, without hesitation, "An older woman carrying bags." Wow. Specific.

I asked him if there were any people he wouldn't ask, "Mom says to be careful of people who are too friendly. A little friendly is OK. But not too friendly. Like if they touch me all the time like some people do. Patting my arm or my shoulder or rubbing my hair, those people are people who might be nice, might be dangerous, I can't trust any of them because I don't know which they are." I saw that he was anxious to get on his way, I also saw I was in danger of falling into the 'too friendly' category, not because I'd touched him at all but because my questions took so much time and effort to answer. I seemed nosy. We wished him well. Watched him change sides and directions. His subway train came before ours did.

Wednesday, October 12, 2011

There was a whack of us having dinner. Ruby and Sadie each had given me huge hugs. Everyone had settled and Ruby was sitting beside me and we were working on a WordSearch puzzle that had been provided by the restaurant on a kiddie menu. Two men had come in, both in wheelchairs, and had been seated at a table nearby. I admit that I had barely registered that they were there. We were all wrapped up in the happenings of the moment and bringing each other up to date on news.

After eating, the kids were a bit restless and occasionally wandered a bit around our table. They were being quiet and they weren't roaming far and, most importantly, the restaurant wasn't busy so they weren't disturbing anyone. They looked out the window. They played with a couple of toys brought with them. They giggled with each other. Over maybe twenty minutes they alighted at the table in their seats five or ten times.

We were wrapping up and getting ready to go when I turned and saw one of the two guys smiling, quite genuinely, as he watched me get a couple of big 'goodbye' hugs from the girls. I smiled back. It was just a small little interchange that I was totally OK with being 'caught on film.'

In the car, driving away, Joe said, "Did you notice anything about the girls?" I admitted, that other than it was great to see them, I didn't notice anything in particular. Well, Joe had been sitting on the other side of the table facing out into the restaurant and was in full view of the girls as they played and of the two men in wheelchairs at the other table.

"They didn't notice the two guys." Joe said, leaving that to hang in the air.

Joe knows that sometimes I tense up when kids come into a restaurant or a theatre or a mall, almost all of them almost always, as they glance over the place, stop short when they see me. They stare, they point, they make note of my difference. Few parents parent about this, perhaps because many of them stare too. I had thought for a long time that it was more about my weight than my chair, but in talking with others with disabilities I find this not true. It's simply about difference. I am 'dually different' but that isn't, I'm told, really an issue. With difference, one will do.

But here, in the restaurant were two kids completely reacting to two diners at one table with a difference apiece. They were both in wheelchairs. Yet the kids incorporated them into their experience as if they were simply two people in the room. They are used to wheelchairs being in their world. They are used to seeing people sit to eat. So, they saw but didn't see, the two men.

That is, I suppose, one of the great gifts that including kids with disabilities in school will give us, as a society. Broadening the perspective of what's human and narrowing the definition of 'difference'. It takes a long time for social change to happen. But it will, I believe now, happen.

I thought the guy was smiling at the hug. And maybe he was. But also maybe, he was smiling in thankfulness of the gift of being in the presence of children who could see him without staring at him. Who could play around him without stopping, their gaze sticking on the adhesive of his difference, and continuing on.

Tuesday, October 11, 2011

When I went to bed last night, I had already decided on what I would write this morning. But I can't write it. The feeling of dread from my dream makes it impossible to write of anything else. I don't often have bad dreams. I don't often wake with a sense of terror. That is not to say that I don't, sometimes, rise into a day filled with uncertainties and anxieties - in fact, that's typical. But this was different. A dream that wouldn't, like most, slip away from my mind.

In my dreams, these days, I am the 'now' me. It's been a couple years since I've walked in my dreams. My dreams now have me riding along in my wheelchair, moving in dreams as I move in life. But my dreams are never about the wheelchair and never really about my disability at all. As anyone with a disability knows, there are terrors much more frightening than dealing with life in a wheelchair. This might surprise those who walk, who seem oddly and frightfully attached to one particular form of of locomotion, even though they spent incredible amounts of time on wheels: in cars, on bicycles, on buses. The mere idea of sitting down to get around, a nightmare to others, is simply ordinary fare to me.

My nightmares are always about the behaviour of others. Others with power. Others with hateful agendas. I do not wish to get into the specificity of this dream here. First, the dreams of others bore me and I can't imagine that mine are any more interesting. Second, I'm still to troubled by it to take the chance of giving it life by giving it words. But, what strikes me, as I think about it, is how terrifying 'others' can be. How 'power' in the hands of 'others' is, ultimately, the most terrifying thing we face, as humans.

I go to work today, with a nightmare, curdling in my stomach.

And I wonder if last night someone, anyone, dreamed of me. I wonder if they woke with fear, terrified how I might use and misuse the power I have in their lives. Is someone I supervise sweating about a meeting today? Is someone with a disability worried that I might, because of a bad sleep, be harsh in my judgements today? Is someone somewhere fearful of me?

I had a nightmare about the power of another. Maybe that's because I still lack the courage to have a nightmare about the power I have myself.

Monday, October 10, 2011

Perhaps the starkest, bleakest, conversation I have ever had took place in mere seconds.

It was near time for me to leave the hospital. By then it was clear that I had survived where it was predicted I would not. I was yet too weak to be feeling joyous at the prospect of more time. The doctor, a man who loved to have information pried out of him, had come into the room to check on me. I was a little surprised because over the last couple of days, he had gone from a gray worried face to one that was a tad more reassuring. But at that moment, his worried face was back.

He'd taken my pulse, which he did ever single time he came to see me. It was as if he had to be reassured that I had indeed lived and that I was indeed going out into a future. As he was noting the rate of my heart, he opened my mouth and broke it. "You need to prepare yourself for what comes next. Most couples do not survive late onset disability." And then he was gone.

As his words found there way into my heart and mind, I lay there completely traumatized. It was like I'd had my breath punched out of me. My aloneness, something always present in every life, took hold of me. The doctor was gone so I couldn't protest. I couldn't shout out that we'd been together for nearly forty years. That I was sure, really sure, that it was not, would not be, over. Instead of shouting out, I shouted in. Like I wanted to shout down the specter of a Joe-less life, a Joe-less future.

I don't know if what the doctor said was true. I do know that what the doctor said was cruel. I now know that what the doctor had said, about 'us' was simply wrong. I had no cause to fear. But I did not know that then.

Until now, I've never spoken of this moment. Until Joe reads this when he gets up this morning, he will not know of it. I didn't tell him, at first, because I didn't want to put the idea in his head. I didn't want to bring up and discuss the possibility of a leaving that I was sure I'd not survive. A life on wheels did not frighten me. A life off the rails did. So, I kept quiet and let the fear settle. Then, later, much later, I couldn't because I hadn't.

Its five years later and I'm writing about gratefulness. I don't want to say that I'm grateful for not being left - though I am. But I have always felt that gratitude for what 'is not' leads the human heart and the human soul down the wrong path. Instead I want to be grateful for what is - the faithfulness, steadfastness, endurance of loving commitment. The desire to live with and love a constantly changing person.

I heard once, in a restaurant, a group of friends celebrating an anniversary. A wife toasted her husband saying that he was 'the same wonderful man she had married'. The idea of that horrified me. To be with the same person for 40 or 50 or 60 years. How horrible! Joe and I are not married, so I'd need to say in my toast, "Here's to the man Joe's become ... here's to the man he will be ... here's to a lifetime of becoming, together ..." I don't think either of us have ever wished for sameness from the other, a constancy of affection and love - yes, but sameness, no." Even when we first got together, I knew that what was, was; what will be, will be. Then, I never predicted disability, but I didn't predict our life together, as it happened, at all.

When I see couple's out. Couple's who, like us, have (to use the doctor's word) survived disability, I wonder. I wonder at the capacity of the human heart to hold, in loose grasp, the constantly moving, evolving, changing, soul of another. To love in this moment, with the 'now' clearly understood is one thing. But to continue to love in the next moment, with a different 'now' is another. To be loved "now" along with all the "thens" causes me, here on the dark early morning of a Thanksgiving Monday, to feel grateful.

(Image of a turkey holding aloft a Canadian flag. "Happy Thanksgiving, eh!" is written beside. Turkey looks to be relieved that the feast has come and gone and he ... like love ... has survived.)﻿

Sunday, October 09, 2011

"Hello," she called out. I turned to see a really attractive woman, my age, scooting towards me. "May I see the controls on your chair," she asked. I turned so that when she arrived she'd have a good view of the joystick and box. One look and she said, "I thought so."

She then told me that she'd just received her new chair and the controls were unwieldy. She demonstrated all the movements it took in order to set the speed and how it required great effort on her part to make any of the adjustments. She had been told that her controls were now standard and that it was what everyone wanted. That led to a real discussion.

I told her of the man who had stopped me outside Metro, to ask about my tires. His tires were narrow which caused him to slip in the snow, mine are wide and give me great traction. I told her that I was inordinately proud of my tires at that moment. Glancing down, I saw that she had good wide tires with a strong tread on them. I said, "Hey, there ma'm, you've got a nice set of tires on you, yourself there." She batted her eyes and looked all coy and said, "Why, I blush."

We howled.

I wished her well and she went one way, I another.

Later, I saw her paying for something at the cash point in the pharmacy. She hadn't noticed me but I called out, "I just knew you did drugs!"

"I know, I look the type."

Again, we laughed.

***

A day or two later I was leaving the liquor store and I saw him sitting quietly near the entrance. He was clearly waiting. I wanted to go speak to him, but didn't. When I saw him again in the grocery store, I had to. I rolled up and caught his attention.

"May I ask you a question?" I asked.

He nodded and I continued. "As you know they've installed these weird bars in the liquor store which are supposed to be wheelchair friendly but make it impossible for me to get into the store through the main entrance. I complained but they told me that they were designed for wheelchairs and wheelchair users can get through. I told them I couldn't. They said I could. I insisted I couldn't. They said that every other person with a disability could. And further more, I was told, they'd had no complaints. I didn't seem to get them to understand that I was actually making a complaint so that wasn't true." I was surprised at the way this all poured out of me but it did. And it felt good.

He listened to all of this and then told me that he, too, couldn't get through the bars and that he used the exit and simply asked people to step aside so he could get in. I told him that I did the same but I resented a store being accessible, becoming inaccessible yet claiming accessibility. He told me that I might want to consider going to the Human Rights Commission. But his face showed what I felt, weariness with the struggle. We continued talking and he noted how I rode high in my wheelchair while he rode quite low. "I can ride higher," he said, flipping a button and rising in his chair, "and I can tip back," flipping another button and slowly tilting. My chair only rolls, which is all that I need.

I thanked him for his time and was off. It was terrific to feel unburdened for a few moments. To be able to talk with another about his experiences, to be able to share a moment where explanations don't need to accompany questions, was simply freeing.

Next time I was in the liquor store, I found the manager. Now I knew I wasn't alone, that others had been forced into entering the exit, I felt a renewed vigour for the fight for accessibility. It's amazing how the non disabled can convince the disabled that our experiences aren't valid, that we are alone in our need, that we are somehow the cause of our own inaccessibility. A moments kinship changes that.

***

Most often when I'm out and about and see or encounter others who use chairs, or walkers, or canes, I note them only because they are in my field of vision. I note them slightly differently because of their slight differences. I note them because it means that suddenly I'm less alone in my world. But, though I note them, I have no real need to talk to them or seek them out. Some seem to even feel a little uncomfortable when our eyes connect, like they are telepathically saying, "all we have in common is the chair, don't presume anything further." I get that and it's true.

But there are moments, like the two above, when disability seeks disability. When one needs to speak to another member of the diverse community of disabled people. Like any minority, there are more differences than commonalities within the group itself. But those commonalities do shape a world view and inform experiences. Those commonalities give common ground. And sometimes they are cause for connections.

In those moments there is no real need for introduction. One simply begins, one simply expects acceptance, one typically receives openness. I have been approached many, many times by others in wheelchairs to be asked a question about my chair, about accessibility, about the best way to get from here to there. These encounters feel as if, in that moment, we let the struggle for inclusion and welcome fall aside and say, "Hey brother," or "Right on sister." Aloneness drops away and a kind of frankness about the world as it is becomes possible.

I always leave refreshed or renewed in some way.

I am grateful for the disability community. I give thanks for the moments where I am less alone.

﻿(Image of a turkey holding a Canadian flag with the words 'Happy Thanksgiving, eh!' printed beside the turkey. Turkey looks happy, probably because this blogger is vegetarian)

Saturday, October 08, 2011

Only days before there was a question as to whether or not I'd survive the illness. The fact that I'd lost the ability to walk had not interested the doctors, they were far too interested in beating back a serious infection. Walking, at that point, hadn't moved up on to their radar. Life, and life alone, was their one and only goal. As for me, I was so weak that I was laid up in bed, I'd learned the strange art of the bedpan, I'd made peace with exhaustion as a constant companion. Therefore for me, walking wasn't even part of the equation.

I'd just come back from having a cat scan and was resting in the room. The door opened a bit and Joe peaked his head through, grinning wildly. While it was tough for me, those days were hell on Joe, it was wonderful to see glee on his face again. I could tell he had a secret. He backed away, opened the door wide and pushed in a wheelchair. "The Doctor told me I could take you out of here and down to the coffee shop on the main floor."

He helped me out of the bed. I had no balance and falling was a distinct possibility. Once in the chair I was too tired to help push. Joe sailed me out of the room into the ward, out of the ward and into the world. We sat and had tea. After only a few days of being secluded in Intensive Care, the world seemed busy and noisy and confusing. How quickly the world becomes small, I mused.

Then, daily, I was out. Sometimes a couple times a day. I learned to walk, on unsteady feet, for a few yards. I've never managed much more than that. It takes much brain power and complete concentration to not fall over. I knew then that the wheelchair was going to become a big part of my life. And it has. Its become more than a part of my life, it's become part of me, part of my sense of self, part of my world view. I always thought that one saw farthest, standing on tip toe. No, the seated view, that's the one that allows you to see a very, very, long way into the heart of the community and the soul of the world.

This weekend, Thanksgiving Weekend, I'm grateful for my wheelchair. I'm grateful for the freedom it offers me. My wheelchair has more mileage on it than most cars, it has travelled more than most people. It has allowed me to feel like movement is possible and that future is waiting.

And, of course, I'm thankful for my wheelchair because both Ruby and Sadie love it so. They love riding on my power chair, seated on my lap and whizzing along a mall. They love, love standing on the back of my manual wheelchair and riding pell mell down a ramp. They are coming for a visit this weekend and I know that there will be several wheelchair rides, for both of them, over the time they are here. I know those rides will bring them joy and bring us closer. Awesome.

Ruby, once when tired, said, "You're lucky, you get to have a wheelchair."

She's right.

I'm grateful for it and, I give thanks.

(Image of a turkey holding a Canadian flag with the words 'Happy Thanksgiving, eh!' printed beside the turkey. Turkey looks happy, probably because this blogger is vegetarian)

Friday, October 07, 2011

(Image of a turkey holding a Canadian flag with the words 'Happy Thanksgiving, eh!' printed beside the turkey. Turkey looks happy, probably because this blogger is vegetarian)

Today, officially, will begin Thanksgiving Weekend.

It's a holiday that, to me, is an important one. As someone who tends to depression and tends to a bleak world view, I need to be reminded to stop, think, and be grateful. Many who know me find it difficult to see the effort it takes to keep the darkness of depression from o'ertaking me - possibility because early in my life the little children's song 'Count Your Blessings' caught my imagination. I struggle, always, to see the other side of situations - a tactic that, for me, has literally been life saving. The lyrics of that song - I bet anyone who knows it will immediately start humming, confused me and inspired me all at the same time:

When upon life’s billows you are tempest-tossed,When you are discouraged, thinking all is lost,Count your many blessings, name them one by one,And it will surprise you what the Lord hath done.
I didn't know what 'life's billows' were and I didn't know that they could be 'tempest tossed'. But I did understand the idea of counting blessings, naming them, 'one by one'. And I always found the song to be right, I was indeed surprised. Even very young I was a bit of a cynic, I wasn't sure that God really had a master plan that necessitated me being born in Sundre Alberta. I figure that would take 'micro managing' to an outrageous level, so I didn't ever buy that. But I did understand that I needed to take notice of the subtlety with which goodness presented itself to me. Pain is louder than pleasure .... AAARRRRGGGGHHHHH!!!! as it compares to mmmmmmmmmmmm. Hatred, with it's rea face, throbbing veins and sweaty forehead - calls attention to itself in ways that love never can - at least in the world of a child.

I remember, one Sunday, home from church, humming the tune and thinking about blessings. I remember the feeling giving way to one of intense loneliness. I remember lying back on my bed with the upstairs window open. I remember the far off sound of a lawn mower. I remember, moments later, the scent of fresh grass filling the room. It was like being visited by pleasure. It was like, hell I'll just say it, God dropping by. Blessings. I have many. I experience more. I am well and truly thankful - but only when I remember to be.

So, I have decided to make this a Thanksgiving weekend. Every day through Thanksgiving Monday, I'm going to write about things I'm thankful for ... and I'm going to give myself the challenge of making all these things, those that relate to disability itself - my experience of the last five years. What I'm grateful for ... what gifts my disability has given me. Not one post for several days about dealing with stares and glares, inaccessibility and inhospitable attitudes, not even a 'whine or moan'.

For four days, it will be an attitude of gratitude from me.

I'm afraid I'll pull a muscles from the effort it is going to take, but hey, I'm in a wheelchair - who cares?

Thursday, October 06, 2011

The Conservative leader, in a desperate attempt to win the election, has resorted to the worst kind of electioneering. He resorted to the use of hatred and homophobia in his discussion of materials available to teachers to deal with homophobia in the schools. This is simply socially irresponsible. This is CANADA, last I looked, LGBT people were citizens.

He falsely referred to these materials as sex education. They are not. They are not mandatory. They are for use on the discretion of a teacher if needed.

He said they were implemented under the present Liberal Government. They predate this Government and were implemented under his own Conservative party.

These materials were specifically highlighted as a way to demonstrate that the Liberals had lost touch with mainstream Ontarians. As if LGBT people were NOT part of the mainstream.

The use of hatred as a motivator to vote for any party needs to be firmly and completely dealt with. I'm tired of gay people being used to whip up a Fundamentalist Fear Campaign to further a political agenda of hate. One day, I fervently pray, it will be people of faith that demands an end to this kind of tactic, that people of faith will say - enough.

I'm tired of it.

Weary of being your easy target.

Tim Hudak, I wasn't going to say it, but you treated me rudely as a disabled person when you and your crew bumped into me and my wheelchair the other day. I thought it maybe was an accident. Now I see, that hatred comes easy to you, perhaps my willingness to give you the benefit of the doubt was an act of kindness that you don't deserve.

These few words begin a conversation that goes one of two ways. One, is a simply about a person, a person's experience or what the relationship between teller and subject learned together. The other is the dreaded "he hates being disabled, so disability is a bad thing, so everything you've said about disability pride and disability identity is wrong. So there!"

I had the "you're wrong" conversation the other day and in it I had to listen to a story about a hugely bitter person who is hugely angry at his disability, who attributes all that is wrong in his life to his disability. I have no trouble believing that the person talking to me was telling the truth. I have no trouble believing that the person in the story is simply the person in the story.

I responded with a true story about a woman I knew who was very pretty but felt that her relationships all failed because she had crooked teeth. I pointed out that her logic didn't make sense. She managed to get into relationships easily but that they never lasted. Maybe she should think about what happens after attraction not before. She stated, firmly, that the problem was she got a lower class of men because they were men who were attract to a woman with crooked teeth. I know, right now, you are thinking I've made this up. I haven't. And, in fact I've run into varients of this theme across my lifetime. Anyways, she got her teeth fixed. Next time I saw her, she was convinced that the problem was that she had toes that slightly pointed in. Seriously.

People always seem to want to attribute responsibility to a 'thing' or a 'circumstance' and not go any deeper. I know that disability brings with it a lot of difficulties, barriers and frustration. But I think it is important to not attribute to disability what doesn't belong to disability. In the same way that one becomes racist by attributing to race what doesn't belong to race. Or one becomes homophobic by attributing to sexuality what does't belong to sexuality. Or one becomes sexist by attributing to gender what doesn't belong to gender. In the exact same way, one becomes disphobic by attributing to disability what doesn't belong to disability. False attribution, to me, is always the beginning of a social evil.

I know gay people who don't like being gay. That doesn't make 'gay pride' wrong.

I know women who feel that women are inferior to men. That doesn't make 'Girl Power' senseless.

Individuals will always be, resolutely, individuals. But I think the conversations that I have with non-disabled peopel who want to negate the ideas of 'pride' and 'identity' as they relate to disability aren't really about their friend's, even though I believe the friend to be real not a conversational contrivance, experience. I think that these ideas, these concepts are so foreign to how people think about disability that minds snap to someone or to some situation that will negate the idea and return a world view to the 'status quo.' Disability is tragic and that's that.

What's interesting, though, is that these conversations are happening at all. That people are beginning to intellectually wrestle with a new way of seeing disability. I wonder if the very first feminist who had a discussion which began "I know a woman who just loves submitting to her husband," walked away thinking "HooRah!!" The topic has be raised. Or if the very first gay activist who had a chat which began, "I know a lesbian woman who is in therapty to change," walked away thiking "ALL Right, now we begin."

Eventually, I believe that we will begin to attribute to individuals what belongs to individual's, and leave it at that. Yep, there are going to be miserable unhappy people who attribute to an aspect of themselves what doesn't belong there. It's easier than doing self examination. It's easier than personal growth.

But in the meantime, I welcome the "I have a friend with a disability who ..." discussions, primarily because they are discussions and that means, that oh Lordy, Lordy, the conversation has begun.

Wednesday, October 05, 2011

I'm getting ready to go away on a short two day trip. I've little time to write and I'll be getting in late. After a lecture day, I'm pooped. So, I've been thinking about a kind a fun thing I've seen done ... 5 things you don't know about me ... (as if you really care)

1) I was a card carrying member of the Patty Duke club. I sent my money in, I got my membership card, I had signed (by a machine) photographs of her. I can still sing words to 'Please, don't just stand there' and 'Funny little butterflies'. Oh, my, I am feeling exposed.

2) I prefer female singers to male singers. Always have. Caused me great scorn. I liked Dionne Warwick while everyone was entranced with the Beatles. I didn't get them, still don't like their music. Still like Dionne's though. Have seen her a few times in concert.

3) I once appeared as an extra in a Chinese film that was shot in Vancouver.

4) When I find something funny about something, I won't leave it alone, it stays fresh, for me, for years. Ask D. about Oranges or J. about Horses, or E. about butt plugs, or Joe about - maybe not.

5) I have never 'not voted' in an election. I've voted stupidly (my first election) and I've voted strategically (most elections) and sometimes I've voted because I believe in the candidate (this election). However, I vote in on line polls, for favourite websites. It all started with voting for Miss Salmo in high school. I became addicted.

Enriched much??

Sorry, blogs on the run will never be more than blogs on the run.

Now your turn, 5 things about you ... or even at least one! See you in the comment section.

Tuesday, October 04, 2011

We were on our way to the passport office to get the paperwork processed. To hurry up and get there after work, we decided to take the subway. Inside, at the elevator to take us down to the mall, from which there is Subway access, we let an elderly woman with a walker go on first as she indicated that she was in a bit of a hurry. Given that I'm quick in my scooter and Joe was hurrying alongside, we passed her in the mall and found ourselves then holding the door to the Subway open for her.

She returned the favour inside and, thus, I ended up heading own the ramp in front of her. It's a long, narrow, ramp with a sharp bend in the middle and I never go down it quickly. So she was right behind me on the way down. I caught her eye as I made the turn to go down the second half. She said, "These ramps are such a Godsend aren't they?" I nodded.

We met again on the subway platform and she made her way over to me, "You know," she said, launching in, "my daughter tells me to tell people that she was borne into her wheelchair. She gets upset at me when I say things like 'the ramp is a Godsend'. She says that people who walk don't go thinking that God sent them stairs. It's just a matter of speech for me, I hope you didn't mind." I said that I didn't mind at all but her daughter had a point.

She said, "Yes, well, what my daughter doesn't understand is that I think that we should be grateful for ramps and they should be grateful for stairs, but that's a discussion we've had too many times." She laughed at the memory and the shared story.

We heard the subway coming and she said that she'd better start on immediately if she expected to get on.

Monday, October 03, 2011

So many of the things I've been reading recently, about disability, have infuriated me. There are words that appear over and over again. Words that appear benign. Words that appear to be about something BIG, about something GRAND, about something IMPORTANT. Words that assume what I want, as a person with a disability, what we want as people with disabilities. Words crafted by others, that pretend to be about us, about our needs, but are only, really, about the sense they get about being gifted in the presence of what they see to be our deficits. Its is only really a fool that could say, "There but for the grace of God go I," and not understand what it says and what it means. There are words that feel good in the mouth of the privileged but burn in the ears of the dispossessed.

Words like: Empower.

I hate this word. I see it all the time. I've written about it before and I will do again, but for now let me rant. Who the hell wants, ever, to be empowered by another? Who the hell wants to be seen as so weak and so passive that they wait for the benevolent help of one's 'betters' for the 'gift' of power? We can only, of course, empower ourselves. We can only, of course, embrace the power we've always had and begin to use it. We can only, of course, raise ourselves. No one can do these things for us. No one can do these things for another. The word 'empower' - where it bothers me most, is when I see it used by those within systems. Systems that have routinely disempowered, routinely disengaged, routinely disregarded those with disabilities. Those they SAY they SERVE. It's a word used without irony, which is, itself, ironic. They first rob of power and then give tiny pieces of it back and call it 'empowerment'. It's like a thief stealing from someone a dollar and then giving a quarter back in an effort to 're-enrich' the victim. Right.

Empower.

I call Bullshit.

Words like: Tolerance

I do not wish to be tolerated. I do not wish to be the 'one' tolerated by the 'many'. I do not wish anyone making the supreme effort to tolerate the mere fact of my presence. I do not wish to be the fart in the elevator that everyone pretends is not there. Existing with the understanding and tolerance of another, existing with the gift of someone's making an exception, someone's making an effort ... as if my existence here, in this place, is not a right but a privilege granted by another. Those who tolerate get to tut tut the tolerated. Those who tolerate get to roll their eyes and glance conspiratorially at the other tolerators at the antics of the tolerated. Those who tolerate get to determine what is acceptable and what is 'just to much my dear'.

Tolerance.

I call Bullshit.

Words like: Kindness

Let me dissuade you of an idea. I do not want your kindness because I do not wish your pity. And let's be honest, kindness most often grows as a weed around the wellspring of pity. Grabbing a door for a pregnant woman who is struggling with parcels to get in is not KINDNESS, for God's sake, it's CIVILITY. We have become a society who wants kindness credited to their humanity card for simple acts of civility. While I do not wish kindness, certainly not more or less kindness than offered to any other, I do wish for civility. I do wish for behaviour that considers me as a person and my needs in the moment. Just as I wish to consider the needs of you as a person and your needs in the moment. Civility is not kindness. Civility is increasingly rare but that does not make it's occurrence exceptional or it's practitioner kind.

Kindness.

I call Bullshit.

Words like: Blindness

Saying to someone with a disability that 'I just can't see disability' or 'when I see you I don't see your disability' or 'I only see abilities', and this is the worst of course, 'I'm just blind to disability.' Oh, freaking, please. PLEASE. No one is 'blind' to my disability and furthermore I DON'T WANT YOU TO BE BECAUSE I'M NOT ASHAMED OF IT. I don't see how you think I should be flattered or, God Forbid, think you are magnificent, because you don't see what is plainly there. I am disabled. Get that. I am freaking disabled. I am in a freaking, fracking, wheelchair. See it? It's the thing under my fat ass!! Don't try to get me to 'play pretend' that my disability doesn't exist to you or to the world. Don't get me to give in to your desire to play 'dress up reality' and feel that you have RAISED ME OUT OF DISABILITY AND INTO EQUALITY. No, don't. Just don't. I am disabled. I don't like the idea of being verbally euthanized by words like 'challenged' or 'special' or 'exceptional'. I don't like being taken out of language and I don't like being taken out of my wheelchair and into fantasy-land. I live here, in reality, and I FREAKING LIKE IT HERE. I do not wish to move into your world where you pretend I don't have a disability and I pretend that you are a saint.

'Blindness.'

I call, double Bullshit.

Hey, here's a word I'd like to hear a little more often: Respect.

Why don't we try that for a little while? Why don't we empower ourselves though kindness and tolerance towards a disability blindness so that we can ... oh, sorry the word respect doesn't fit in that sentence. Respect Difference. Respect Diversity. Respect Disability. Respect engenders respect. None of the other words have that capacity. None of the other words have within it a deep need for mutual change. None of the other words call us out into real interaction and real comradeship in the real world. Respect knocks at the door of social change. I'm guessing that's why kindness, and tolerance, and 'blindness' and empowerment never answer.

Disability Pride

About The Blog's Name

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Dedication

This blog is dedicated, in part, to Neuengamme prisoner 28631.

About Me

Joe and I live in an apartment right smack dab in the center of Toronto. I have worked in the field of disability since graduating from university over 30 years ago. I became disabled a few years ago now and use a wheelchair when out in the world. For those interested, most of my books are available through www.diverse-city.com and if you are wishing to book a lecture or consultation you may do so by emailing daveandjoe@hotmail.com

Best Health Blog 2010

Requiem

There are those who have affected the course of my work and my career. I wish to remember them here:

Stella Young

Manuela Dalla Nora

Bob Clayton

Viktor Frankl

Robert Sovner

Marsha Forrest

Terry Haslam

John Money

Susan Tough

Sol Gordon

Winnifred Kempton

I believe that we should speak often and well of those who passed our way and whose lives gifted us. Here in this space I wish to memorialize those whose lived lives in service to those with disabilities.